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December 29, 2013

Kissing Ketosis Goodbye?

Around that time that Jade's seizures were at their worst, I wrote this entry on Finding Strength. (Go ahead and read it. This post will be waiting for you when you get back.)

That was a little over five years ago. Five long years and just a little before we started Jade on the ketogenic diet. Thank goodness we were able to find the strength to get us through the storms because the good times have arrived!

Long-time readers of Michael's Meanderings will know that we achieved seizure-freedom for Jade a few years ago and last September she had a squeaky-clean EEG. We owe so much to the ketogenic diet and to the team at BC Children's Hospital who helped us to administer it - but gosh darn it the diet is a pain in the butt (still better than the seizures, though) and after so many years of having to kowtow to the diet's demands, we dreamed of a day when we would be free to prepare a meal without having to weigh every ingredient to the tenth of a gram, or plan our every waking moment around Jade's snacks and meals and supplements.

Well, I am pleased to report that the day has come. Actually, it has been several weeks now, but it takes a while to do the wean off the diet and I didn't want to jinx anything. Jade is out of ketosis and appears to be thriving.

Here she is, being allowed to eat as much protein as she wants for the first time in five years.

I'm tickled by how much she enjoys being able to eat new foods and by how much she enjoys eating as much of it as she wants. She has so much more energy! She's growing (She's very short compared to her classmates: A "side effect" of the diet)! I'm also tickled that we don't have to use the scale anymore! She can eat when she's hungry and isn't constantly begging for food! We don't have to prepare multiple meals at supper! We don't have to lug her meals around with us or prepare them in advance! Oh, the freedom!

So much freedom, thats we're going to Disneyland! I kid you not! While possible on the ketogenic diet, the logistics of traveling from Whitehorse to Disneyland while administering the diet sounded as reasonable as packing the car for a weekend trip to Mars.

Now, we're not out of the woods yet. Yes, she's off the diet. Yes, she appears to be doing well, but that doesn't mean there aren't things going on in that noodle of hers that we can't see. We'll be going back to BC Kids in February for another EEG and, hopefully, everything will look great. If not, well, we'll cross that bridge when we come to it. For now, we'll revel in the glow of what feels like a fairy tale ending and hope that there's no sequel.

The Ketogenic diet is a treatment for epilepsy that relies on inducing a state of ketosis. The diet prescribes foods high in fat, and heavily restricts carbohydrate intake. As fats become the body's primary source of metabolic energy, ketones accumulate in the brain, which can alleviate epileptic symptoms. The diet is more effective in children than adults, particularly when anticonvulsant drug therapy is ineffective (20%-30% of patients) or contraindicated.

The diet provides 3-4 grams of fat for every 1 gram of carbohydrate, calling for such foods as high-triglyceride dairy products (butter, cream, mayonnaise) and peanut butter. Carbohydrates, found in breads and starches, are eliminated from the diet, and liquid intake is often restricted as well in order to aid ketone accumulation.